Treatment Burden

I learned a new term yesterday: Treatment Burden. It is defined in the medical literature as “the workload of healthcare and its effect on patient functioning and well-being” This workload includes everything from the time it takes to make and travel to doctor appointments and treatments, acquiring supplies and medication, maintaining supplies and doing whatever treatments can be done by oneself, from counting meds to using devices like feeding pumps or nebulizers, etc. The literature also recognizes that patients in the US have the additional responsibilities related to dealing with insurance companies and a fractured health care system.

There is so much more written on Treatment Burden than on Gastroparesis. That makes sense because it is a universal burden. It applies to anyone who needs health care. But it hits those of us with chronic illnesses the hardest. A cursory search revealed an entire volume of a respiratory medicine journal dedicated entirely to the impacts of Treatment Burden on patients’ health outcomes. And although my health issues are not respiratory in nature, the more general articles resonated with me deeply.

It has been over two weeks since my doctor submitted my updated order for my nutrition. And that order still has not been acknowledged by our insurance company. It has also been 25 days since we got our new insurance (this is our fourth insurance company in 13 months). After many calls and much hold time, I learned that my insurance company allows 45 days for processing orders unless the doctor puts it in as an emergency order. Which, of course, has taken literally hours of my life to hopefully make happen. I am still waiting for confirmation from the insurance company.

I am a champion sleeper. Anyone who knows me well can attest to that. And yet here I am, at 5:40 AM after having been laying awake for almost 2 hours stressing about the fact that after today I will have to tap into my unexpected bonus reserve of feed bags that I got from a fellow Gastroparesis Warrior. The reserve that it supposed to be my backstop against emergencies. Little did I know that insurance companies’ internal policies (I checked, and there is nothing in the meagre policy information they sent us or in their incredibly poorly designed app or website that say anything about the 45 day processing time) even though the person I spoke to at the company said it matter of factly. I was told that my order was “well within their processing time of 45 days.”

I used to think that the term Gastroparesis Warrior was strange because a cohort of people being starved by their bodies hardly have the energy to be warriors. That was before I truly understood just how much we have to fight for treatment and supplies. And just how many of those battles feel arbitrary and cruel.

Just yesterday there was a discussion in one of my groups about coverage of Zofran (Ondansetron). Ondansetron is a cheap generic, basic anti-emetic and is central to how folks with gastroparesis get through the day. It is one of the very few anti-emetics that does not make folks drowsy. The OTC alternatives are Benadryl and Dramamine, a single dose of either will knock me out for a couple of days. Whereas, I can take as much or as little Ondasetron as I need in a day and easily stay alert.

Our latest insurance company will only fill 18 pills at a time. Although I can refill it until I reach the limit of my Rx. Assuming a reasonable (for me) average of 3 pills a day, that doesn’t even cover a week supply. But it does add a significant treatment burden when I have to renew my meds so often and send David out to the pharmacy to pick them up for me.

In a conversation with folks from around the world, patients everywhere but the US were able to fill their full Rx. For the folks within the US, it varied widely. Some folks could only get 9 pills at a time. One lucky woman is able to get a 90 day supply. But most of us were looking at a max of 30 pills at a time. And that did not represent a full month’s of medication for any of us.

The functionality of our days varies. And sometimes we just don’t have it in us to reorder meds every 3-6 days. That is when we (myself included) start to hoard our meds. Before I take an Ondansetron out of its foil packet, I always assess whether my nausea level warrants the medication. And I often go without because I want to make sure to save them for when I really need them. That is a hard habit to break even when we pay the $25 cash for 30 pills at a time. And that, my friends, is also a Treatment Burden.

To summarize the article on Treatment Burden and work, all too often the Treatment Burden on patients with chronic illnesses makes working extremely difficult. I spend easily a minimum of an hour+ a day on tasks that fall under the rubric of a treatment burden. In fact, after running the last couple of weeks through my head, I can confidently say that I have spent more time dealing with the external logistics of my illness than I have on my feeding and stoma care routines. And those take a couple of hours over the course of the day. And yet, Social Security clearly states that simply having a feeding tube is not enough to make one eligible for Disability benefits.

That kind of crushes me (although I have started my application anyway) because after 2 years on Disability (which counts from the minute the original application is submitted, which in my case was a few months ago) one is automatically eligible for Medicare. Medicare may be a nightmare of bureaucracy, but as a government program, all of their administrative rules, including internal policies, have to be made public. So while navigating it may still be a nightmare, it would at least be a nightmare where I can access the rules of the game and figure out how to work within them. Also, ironically both Medicaid and Medicare and generally more generous with supplies and without additional “cost sharing” or copays.

Last night before bed I was commenting to David that as my nutrition levels increase, the visceral feeling of starvation is fading. And as traumatizing as those memories are, I sometimes need to tap into them to give me the impetus to make yet another phone call where I will inevitably sit on hold forever. And then, when I do manage to talk with a human (I have literally gone through 15 minutes of prompts before finally being put on hold to wait to speak with a human) it inevitably results in me needing to make more phone calls. Because folks, that is my choice. Go back to starving or continue the Sisyphean tasks necessary to keep me fed.